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Simplifying medical treatment decision making and advance care planningEnsuring Victorians can make decisions about their future medical treatment
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Simplifying medical treatment decision making and advance care planningEnsuring Victorians can make decisions about their future medical treatment
ii Simplifying medical treatment decision making and advance care planning
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Authorised and published by the Victorian Government, 1 Treasury Place, Melbourne.
© State of Victoria, Department of Health and Human Services January, 2016
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recipients of services. This publication may contain images of deceased Aboriginal
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or quotation.
ISBN 978-0-7311-6977-1 (pdf/online)
Available at www.health.vic.gov.au/acp
(1601019)
iii
Summary 1
What the proposed Medical Treatment Planning and Decisions Act 1 will do
The purpose of this position paper 1
Developing a Medical Treatment Planning and Decisions Bill 2
Inquiry into End of Life Choices 2
Greater Say for Victorians: Improving End of Life Care Consultation 2
Background 3
The strategy 3
A short history of relevant Victorian law 4
The government’s proposal 6
Key elements of the proposed Medical Treatment Planning 8 and Decisions Act
Broader application 8
An advance care directive for current and future conditions 8
Advance care directives encompassing preferences and values 9
Simplifying decision making for someone without capacity 10
Supporting people to make their own decisions 11
Preferences, values and rights 11
Simplifying the medical treatment decision-maker hierarchy 12
Removing the confusion about the powers of medical treatment 12 decision makers
Better safeguards 13
Young people 14
Consolidating and clarifying laws 15
Conclusion 16
Contents
Simplifying medical treatment decision making and advance care planningiv
1
The Victorian Government is committed to giving statutory recognition to advance care
directives so Victorians can document their treatment preferences for existing and/or
future conditions.
The government believes all Victorians are entitled to quality medical treatment that is
consistent with their preferences and values.
Currently, the legislative framework is complex and difficult for health practitioners
and the public to navigate. Although there are a number of relevant Acts, there is little
a person can do to ensure their preferences are followed in relation to future treatment
when they no longer have capacity. This often leads to fear of invasive procedures that
are not wanted, or are not reflective of a person’s values and preferences.
To that end, the government is proposing to simplify the legislation regarding medical
treatment decision making. The proposed Medical Treatment Planning and Decisions
Act will provide a comprehensive legislative framework to ensure that people are
empowered to make decisions about how they want to receive care, including through
an advance care directive.
What the proposed Medical Treatment Planning and Decisions Act will doThe proposed Act aims to:
• provide Victorians with a new process for medical treatment decision making in
line with contemporary views about how people participate in decisions about their
own medical treatment
• simplify the existing legal framework for medical treatment decision making
and ensure statutory recognition of advance care directives for current
and future conditions
• support existing efforts in implementing advance care planning.
The purpose of this position paperThis position paper has been developed in order to:
• clearly communicate the government’s intentions in relation to legislative changes to medical decision making and advance care directives
• seek feedback on the best ways to plan for and implement the proposed Act.
The proposed changes to the law will ensure Victorians can guide their medical
treatment. These changes will not affect what constitutes unlawful medical treatment,
including physician assisted dying.
Changing the legislation will allow Victorians to have confidence in the health system
to respect their decisions about medical treatment. This Simplifying medical decision
making and advance care planning position paper provides information about the
government’s proposed Medical Treatment Planning and Decisions Act and invites
feedback via email at [email protected].
Please note that submissions about physician assisted dying in response to the position
paper will not be considered relevant.
Summary
2 Simplifying medical treatment decision making and advance care planning
Developing a Medical Treatment Planning and Decisions Bill
In developing the proposed Medical Treatment Planning and Decisions Bill the
government has considered evidence from a range of sources, including:
• national and international research on advance care planning and legal frameworks
• advance care planning legislative frameworks in other Australian jurisdictions
• the Victorian experience of implementing advance care planning in healthcare services
• preliminary discussions with a range of key stakeholders who may play a role in implementing important elements of the proposed law
• relevant feedback from broader Victorian consultation activities including the Greater Say for Victorians: Improving End of Life Care consultations and public submissions to the Parliamentary Standing Committee’s Inquiry into End of Life Choices.
Inquiry into End of Life ChoicesThe Legislative Council’s Legal and Social Issues Committee conducted an Inquiry
into End of Life Choices. The Committee received more than 1,000 submissions and
conducted 17 public hearings.
On 9 June 2016, the Committee tabled its report in Parliament. The government is
considering each of the Committee’s recommendations and will provide a full response
in due course. This Position Paper and the proposed new legislation are focused on
medical treatment decision making and advance care directives.
The proposed law does not deal with any legislative considerations related to physician
assisted dying. This is a different issue and is not part of the proposed Medical
Treatment Planning and Decisions Bill.
Greater Say for Victorians: Improving End of Life Care ConsultationThe proposed legislation has also been developed considering the outcomes of a recent
consultation with the community and key stakeholders involved in healthcare delivery.
As part of the government’s Greater Say for Victorians: Improving End of Life Care
consultations, almost 700 people participated in 28 forums across Victoria. A key focus
of the consultation was how legislative changes to advance care planning could improve
end of life care. The three most important issues for enabling genuine choice were
identified as:
• community awareness and education
• open and documented discussions
• a legal framework that ensured advance care plans were respected.
This feedback has informed the government’s approach to medical treatment
decision making legislation.
3
The current legislative framework is complex and difficult for health practitioners and
the public to navigate. Studies have shown that even health practitioners working
extensively in end of life care have critical gaps in their understanding of how decisions
should be made for patients who no longer have decision making capacity.
There are four Acts that govern medical treatment decision making for people who do
not have decision making capacity:
• the Guardianship and Administration Act 1986
• the Medical Treatment Act 1988
• the Powers of Attorney Act 2014
• the Mental Health Act 2014.
Each Act contains different definitions and tests for capacity, and creates
different obligations.
Although there are a number of relevant Acts, there is little a person can do to ensure
their preferences are followed in relation to future treatment when they no longer have
capacity. Introducing a new Act to give statutory recognition to advance care directives
within the existing framework is likely to create further complexity and confusion.
Creating a comprehensive legislative framework for advance care planning will help to
ensure people are empowered to make decisions about how they want to receive care.
This will provide comfort to people that their preferences and values will be respected and
ensure that health practitioners can understand and comply with their legal obligations.
Establishing a legislative framework will support and strengthen the advance care
planning that is already being undertaken by healthcare services across Victoria.
The strategy Victorian health services have been undertaking advance care planning since the early
1990s, and in 2014 the Advance care planning: Have the conversation – a strategy for
Victorian health services 2014–2018 was released.
The strategy aims to ensure all Victorians accessing health services will have
opportunities to express their preferences for future treatment and care through
advance care planning. These preferences will guide treatment if they become unable
to communicate or participate in decision making.
The government believes that statutory recognition of advance care directives will
strengthen the existing implementation of advance care planning in Victoria.
Background
4 Simplifying medical treatment decision making and advance care planning
A short history of relevant Victorian lawThe common law gives all people with capacity the right to make decisions about what
happens to their body. Any interference with a person’s body by a health practitioner
without consent is unlawful.
Victorian law on obtaining consent to medical treatment when a person does not
have capacity has developed over the last 30 years and in response to particular
policy concerns.
Guardianship and Administration Act 1986
The Guardianship and Administration Act was enacted to ensure that the ‘best interests’
of people with ‘disabilities’ are protected by a guardian. The Act established a scheme
for appointing a decision-maker when an adult, because of disability, was incapable of
giving consent. The Act enables guardians to be appointed to make decisions for people
across of range of issues, including medical treatment.
Refusal of treatment
People have a common law right to demand the withdrawal of treatment, but if illness or
injury impaired the capacity of a person, they could not make this demand. The Medical
Treatment Act 1988 established a system to allow people to refuse medical treatment
for current conditions. By completing a refusal of treatment certificate, a person with
decision making capacity can refuse treatment even if they subsequently become
impaired and no longer have decision making capacity.
A person could refuse treatment for current conditions in a legally binding form;
however, decision making more generally for patients who were not competent remained
in the hands of a guardian appointed by a tribunal. The Medical Treatment (Enduring
Powers of Attorney) Act 1990 introduced the concept of an agent in to the Act to give
people greater control. A person could now appoint an agent who would make decisions
in accordance with their wishes if they lost the capacity to do so.
Amendment to the Guardianship and Administration Act 1986
The Guardianship and Administration Act was also amended by the Guardianship and
Administration (Amendment) Act 1999. This acknowledged that there was often not a
formally appointed substitute decision-maker, and instead family members or carers
make decisions for patients. The Act introduced the concept of a ‘person responsible’
as a means of ensuring there would always be someone to make a decision.
Mental Health Act 2014
The Mental Health Act provides for the assessment, detention and compulsory treatment
of people with severe mental illness. The Act allows a person to prepare an advance
statement to guide treatment decisions in the event the person is made a compulsory
patient. The Act also allows a person to nominate someone to support and advocate for
them. The Mental Health Act will continue to operate alongside the proposed Act.
Advance care directives
A person may make decisions about how
they would like to be treated for current and
future conditions and may appoint agents
to make decisions consistent with their
preferences and values.
Powers of Attorney Act 2014
The Powers of Attorney Act introduced the role of an enduring attorney, who may make
decisions on health matters. The Act established principles for enduring attorneys,
including that they must exercise their power in a way that is least restrictive of the
person’s ability to decide, and is supportive of their inclusion in the process.
Figure 1: An overview of current approaches to advance care planning in Victoria
Common lawA doctor
cannot provide treatment to
a patient without their consent.
Guardianship approach
When a person is not competent to
consent, a guardian may make medical
decisions for them.
Treatment certificates
A person may make decisions about how
they would like their current conditions
to be treated.
A person may also appoint an agent
to make decisions for them.
5
6 Simplifying medical treatment decision making and advance care planning
The government believes a person should be able to determine which medical treatment
they receive.
When a person has decision making capacity they can control their treatment, but
currently a loss of capacity may also result in a loss of control. This can cause people
to fear they will be provided with invasive procedures that they do not want, or that the
treatment provided will not be consistent with their preferences and values.
The government’s proposal will simplify the legal framework for medical treatment
decision making when a person does not have capacity and ensure statutory
recognition of advance care directives for current and future conditions.
To provide Victorians with a new process for medical treatment decision making, which
is consistent with contemporary views about how people participate in decisions about
their own healthcare, a new Act would:
• allow a person with decision making capacity to develop an advance care directive
• clarify the process for medical treatment decision making for people who do not have decision making capacity, including requirements to comply with advance care directives
• recognise supported decision making and that, when substitute decision making is required, decisions should be consistent with a person’s preferences, values and rights.
The key changes proposed by government are listed in Table 1.
The government’s proposal
7
Issue Current position Proposed position
Available legal instruments to make binding treatment decisions
Refusal of treatment certificate – with which a person may refuse treatment for current conditions.
Advance care directive – with which a person may refuse or consent to treatment for current and future conditions and outline their values.
Substitute decision-makers A person may appoint an agent or an enduring attorney. The Victorian Civil and Administrative Tribunal may appoint a guardian. If no one has been appointed a ‘person responsible’ may be recognised. Each form of substitute decision-maker has different powers.
A person may appoint a medical treatment decision maker and the tribunal may appoint a guardian. If no one has been appointed, a medical treatment decision-maker may be recognised. Each form of medical treatment decision maker will have the same powers.
Considerations for making substitute decisions
Different legislation contains different considerations, including the person’s ‘best interests’ and the person’s wishes.
The proposed Act will contain a single test for all medical treatment decisions and medical research procedure decisions– that the decision is consistent with the person’s preferences, values and rights.
Supported decision making Different legislation contains different tests for capacity and some legislation does not recognise that capacity may vary over time and for different decisions.
The proposed Act will provide that a person should be presumed to have capacity and recognise that they should be supported to make their own decisions. The Act will also provide for the appointment of a support person.
The status of an expression of values
While a person may refuse a particular treatment, it is not clear what legal weight should be given to a written statement of values.
As part of their advance care directive, a person will be able to complete a values directive. Health practitioners and medical treatment decision makers will be required to give effect to a values directive.
Legal obligations of providers The Medical Treatment Act only applies to registered medical practitioners under the Health Practitioner Regulation National Law and creates a criminal offence of medical trespass for noncompliance.
The proposed Act will apply to all practitioners registered under the Health Practitioner Regulation National Law and paramedics. Noncompliance may constitute unprofessional conduct.
Table 1: Summary of key changes
8 Simplifying medical treatment decision making and advance care planning
Broader applicationThe proposed Act would apply to all registered practitioners under the Health
Practitioner Regulation National Law and paramedics. The Medical Treatment Act
currently only applies to medical professionals. The proposed broader scope reflects
changes in the way that medical treatment is delivered and recognises that health
practitioners other than doctors have greater responsibilities.
‘Medical treatment’ is currently defined differently across different legislation.
The definition of medical treatment is important because it will determine which
treatments can be refused. It is proposed that:
• Palliative care continues to be excluded from the definition of medical treatment. This would preclude people refusing palliative care in an advance care directive and would prevent medical treatment decision makers refusing palliative care. However health practitioners will be required to consider the person’s values, including any values expressed in an advance care directive in delivering palliative care.
• The provision and prescription of pharmaceuticals be included in the definition. Prescribed medications can be just as invasive as any other medical treatment and advances in pharmacological therapies mean that they are increasingly used in medical treatment.
An advance care directive for current and future conditionsThe proposed Act will enable a person with decision making capacity to prepare an
advance care directive. An advance care directive is a document that allows people to
express their preferences and values for their future treatment. Ideally, the document
is prepared over time, and in consultation with health practitioners, friends and family.
Many people already prepare advance care directives and are supported by health
providers to do so; however, their legal status is unclear. A person may also prepare a
refusal of treatment certificate for current conditions. In an advance care directive a
person will be able to give directives in relation to both current and future conditions.
It is proposed that in an advance care directive a person will be able to:
• give an instructional directive (which will provide specific directives about treatment a person consents to or refuses and which health practitioners must comply with); and/or
• give a values directive (which will describe a person’s views and values; a medical treatment decision maker and health practitioners will be required to give effect to a values directive as far as reasonably possible when making treatment decisions); and/or
• appoint a medical treatment decision maker (who will make decisions on behalf of a person when they no longer have decision making capacity); and/or
• appoint a support person (who will assist a person to make decisions for themselves by collecting and interpreting information or assisting the person to communicate their decisions).
Key elements of the proposed Medical Treatment Planning and Decisions Act
9
Advance care directives encompassing preferences and valuesHow an advance care directive is used will vary depending on what a person’s advance
care directive contains. This includes the following circumstances:
• If there is a relevant instructional directive, this may constitute consent to treatment, and a health practitioner may proceed with clinically indicated treatment. The instructional directive may also constitute a refusal of treatment, which would require the health practitioner not to provide, or cease providing, a particular treatment or treatment generally.
• If there is a relevant values directive, the health practitioner must consider the values expressed but will need to turn to a medical treatment decision maker to consent to medical treatment.
• If a medical treatment decision maker is appointed, the health practitioner must turn to this person to receive consent to medical treatment if there is not a relevant instructional directive.
Examples of a values directive:
If the time comes when I can no longer take part in decisions for my own future, I want to
receive whatever quantity of drugs can keep me free from pain or distress, even if death
is hastened. If there is no reasonable prospect of recovery I do not consent to be kept
alive by artificial means. I do not wish to be transferred to
hospital and should like to die in my own bed.
I do not want any cancer treatment if my disease progresses to the point where
chemotherapy would only make me sicker or offer little benefit and drain any joy
that I might otherwise experience in my last days.
10 Simplifying medical treatment decision making and advance care planning
Simplifying decision making for someone without capacityRather than just introducing another legal document into an already complex space, it
is proposed that a Act would create a consolidated framework for medical treatment
decision making if a person does not have capacity to make a decision. The proposed
Act would establish a simple process for health practitioners and members of the
community to follow.
If a person has decision making capacity, they should always make treatment decisions
for themselves.
Under the proposed Act, a health practitioner would need to determine whether a person
has decision making capacity and there would be a presumption that a person had
capacity. Consistent with contemporary practice, this would be determined by whether
the person is able to:
• understand information relevant to the decision and the effect of the decision
• retain that information to the extent necessary to make the decision
• use or weigh that information as part of the process of making the decision
• communicate the decision, as well as their views and needs, in some way, including by speech, gestures or other means.
If a person does not have decision making capacity, a health practitioner will be
required to make reasonable efforts to locate an advance care directive.
If an advance care directive is located, a health practitioner will be required to
comply with the directive. A failure to comply with the directive may constitute
unprofessional conduct.
11
Supporting people to make their own decisionsFor some people with chronic diseases or dementia, for example, their illness trajectory
may take them through stages of varying capacity. The proposed changes will make the
law more consistent with contemporary practices around decision making, including
creating a presumption that a person has decision making capacity and that decision
making capacity should be assessed for each decision.
The Act would also recognise that just because a person needs support to make a
decision, this does not mean that they do not have decision making capacity.
It is proposed that the role of a ‘support person’ be formally recognised. A formally appointed
support person will assist the person to make their own decisions by having access to medical
records (if relevant), communicating on behalf of the person and advocating for them.
As a nurse with hospice experience I knew my friend could take on the role of
advocate for me. I knew that she would help me stay informed, of being in charge
of my own life/options. I was determined that I would have the information
needed to decide how the last few months of my life would be lived.
Preferences, values and rightsThere are currently a range of tests through which medical treatment decision makers
make medical treatment decisions, including ‘best interests’ tests and requirements that
a decision be consistent with the person’s wishes. ‘Best interests’ tests rely on subjective
judgments about what the medical treatment decision maker believes would be best
for a person. Relying on a person’s wishes is equally unhelpful if a person has never
expressed a view about the relevant decision.
The proposed Act will introduce a single test to guide medical treatment decision makers
when there is not a relevant advance care directive. A medical treatment decision maker
will first be required to consider any preferences expressed by the person. If there are
no relevant preferences, the medical treatment decision maker will then consider the
person’s values they would likely consider if they were making the decision. If these also
cannot be determined, the medical treatment decision maker will be required to make
decisions that are consistent with the person’s rights.
12 Simplifying medical treatment decision making and advance care planning
Simplifying the medical treatment decision-maker hierarchy If a person has not given a relevant instructional directive or appointed a medical
treatment decision maker, a health practitioner will be required to identify a medical
treatment decision-maker to consent to or refuse medical treatment.
The Act would provide a hierarchy for determining who the medical treatment decision-
maker is. This is likely to be the first of the following with a close and continuing
relationship with the person:
• a spouse or domestic partner
• the primary provider of care and support (excluding paid care providers)
• a child
• a parent
• a sibling, or
• if none of the above can be located, the Public Advocate will be the decision-maker of last resort for medical treatment decisions for ‘significant’ treatments. If a medical treatment decision maker cannot be located, a health practitioner may proceed with a ‘routine’ treatment.
The Act would require the medical treatment decision maker to have a close
and continuing relationship with the person they are making the decision for.
The Act would also allow the Victorian Civil and Administrative Tribunal (the Tribunal)
to recognise a person as a medical treatment decision-maker, even if they do not
have one of the listed relationships. For the Tribunal to recognise a medical treatment
decision-maker, they would need to assess that the person has a close and continuing
relationship and be able to show that, given their understanding of the preferences and
values of the person, they would be the most appropriate medical treatment decision
maker in the circumstances to make medical treatment decisions.
Removing the confusion about the powers of medical treatment decision makersIt is proposed that the current distinction between an appointed medical treatment
decision maker being able to refuse treatment and a medical treatment decision maker
recognised by statute being able to withhold consent, be removed. The distinction is
confusing and not widely understood. Instead, it is proposed that all medical treatment
decision-makers only be empowered to refuse treatment if:
• the medical treatment would cause unreasonable distress to that person, or
• there are reasonable grounds for believing that the person, if they had capacity, after giving serious consideration to their health and wellbeing, would have refused the treatment.
13
Better safeguardsThe proposed Act will contain a number of safeguards to ensure that decisions are
consistent with a person’s preferences and values.
People will be encouraged to make advance care directives before they are actually
required; this ensures they have time to reach considered positions and talk with family,
friends and their health practitioners. While people will be advised to regularly review
their advance care directive, it is recognised that there will inevitably be situations in
which it would not be appropriate to apply an advance care directive.
The proposed Act will allow applications to the Tribunal for an order that an advance
care directive should not be applied in the circumstances if circumstances have
changed since the completion of the directive so that the practical effect of the
directive would not be consistent with the person’s preferences and values.
If treatment is required urgently, and there would not be sufficient time to apply to the
Tribunal, a health practitioner may choose not to follow an advance care directive if
the above circumstances apply. If it is unclear how an advance care directive applies
in the circumstances, it will not be applicable.
It is also proposed that an additional safeguard be created to ensure that some
decisions are reviewed. Where a medical treatment decision maker refuses significant
medical treatment for a person in circumstances where a health practitioner reasonably
believes that the medical treatment decision maker is unable to know or infer the
person’s values or preferences, the health practitioner must notify the Public Advocate.
If the Public Advocate finds that the decision to refuse treatment is unreasonable in
the circumstances, the Public Advocate must take the matter to the Tribunal. This
safeguard will protect people who may never have been able to express their values
and preferences or have had decision making capacity.
If there is a disagreement about how an advance care directive should be interpreted
or applied in the circumstances, a health practitioner or any person that the Tribunal
is satisfied has a special interest in the affairs of the person will be able to apply to the
Tribunal to resolve the disagreement.
14 Simplifying medical treatment decision making and advance care planning
Young people People under the age of 18 can consent to medical treatment if they have capacity to
understand the nature and effect of the proposed treatment.
The level of maturity of some young people means that they are capable of
understanding the nature and effect of a medical treatment. For other young people
of the same age their level of maturity may mean they are not capable of understanding
the nature and effect of a medical treatment. Advance care directives will allow people
to make decisions about their future medical treatment. This may require young
people to have a more developed understanding of themselves and an ability to think
abstractly to identify how they may feel in the future. While some young people may
be able to make decisions about medical treatment required immediately, they may
not be able to make more abstract decisions.
The proposed Act will allow anyone with capacity to make an advance care directive.
This recognises that, wherever possible, the person most affected by a medical
treatment decision should be the person who makes that decision. This would mean
that any person under 18 with the capacity to understand the nature and effect of
the directive could make an advance care directive.
The parent of a person under 18 will automatically be their medical treatment
decision maker.
Cory’s story
I’ve got a disease that makes me weaker all the time. It’s painful and I basically live in
hospital now. When they told me it couldn’t be cured I was angry and a bit frightened -
I’m only 17. My palliative care team is really good. I talk to them about controlling pain,
about how I’m feeling, and what I want to do with my life. I can’t go home, but I keep in
touch with my friends and school. I talk to the carers about my treatment and getting
into a hospice closer to home. I know what treatments I want and what I don’t want,
and they helped me write all that down so it’s clear for everyone and they help my
family as well.
(Taken from Living, dying, and grieving well: a guide to palliative care)
15
Consolidating and clarifying lawsCurrently the law in relation to medical treatment is spread across different legislation.
The proposed Act will consolidate and clarify this law. This will include removing
provisions governing medical research procedures from the Guardianship and
Administration Act and placing them in the proposed Act.
The proposed Act will not significantly alter these laws, but there may be minor changes
because the provisions will be in a proposed Act. For example, the proposed Act will
introduce more contemporary concepts of capacity; supported decision making; and
substitute decision making. It is anticipated that this will enable more people to make
their own decisions. The proposed Act will not use a ‘best interests’ test, and instead
decisions for people without capacity will be made by reference to their preferences,
values and rights. This will also apply to decisions about medical research procedures.
The provisions relating to special procedures will remain in the Guardianship and
Administration Act. The provisions relating to medical treatment for compulsory
patients will remain in the Mental Health Act.
16 Simplifying medical treatment decision making and advance care planning
The Victorian Government is committed to giving Victorians a greater say in their
healthcare by simplifying the legislation regarding medical treatment decision making.
The government recognises that these proposed changes will require a strong
partnership between stakeholders and government to successfully implement the
proposed Act and looks forward to working with the health sector and the community.
The government is interested to receive any feedback about the legislation outlined in
this position paper. Comments can be provided to the Department of Health and Human
Services by emailing <[email protected]>
The department reserves the right to publish stakeholders’ views regarding the
new legislation in subsequent reports or discussion papers. If you do not wish your
submission to be quoted in other departmental publications, please indicate this in
your submission.
Conclusion
